Our Hell Part 3

"I don't like you" Amelia said through gritted teeth.

She was saying it to the surgeon that would be removing the "mass".

The surgeon had been explaining to my parents and I what she knew from the MRI of Amelia's abdomen.
She was explaining to all of us what her plans were in the surgery.

Amelia had requested that all discussions with doctors be held in front of her.
This was the first sign that it was no longer a good idea.

Amelia is never nasty and has never told someone she doesn't like them.
The enormity of this situation was too much for her to process, especially when a doctor is explaining what would happen after she was cut open.
Amelia was overwhelmed and becoming distressed.
We had to start remembering that she is only 13 years old.

We entered another room to be told that the mass needed to be removed whole.
If it was malignant, there was to be "no spillage", nothing left behind.
The cut would be substantial due to the size of the mass and the fact it needed to not be damaged upon it's removal.
It was to just be lifted out.

At this stage at least one ovary would also be taken.
The surgeon wanted to avoid taking the second one, if it showed no sign of being joined or affected.
A child of Amelia's age needs at least one ovary to assist with overall growth and development.
Hormones, female growth and healthy development during the teenage years.
If she did need to take the second ovary, Amelia would need to take HRT for the rest of her life.

The appendix was going to be removed.
The MRI showed it was damaged from the mass.
It was either joined, affected or had just been pushed so hard by this foreign entity.
It was also causing the pain Amelia complained of in her right side.

Biopsies would be taken of all surrounding organs and "a wash" conducted.
The wash would identify any "foreign cells" floating around.

They were going to try and identify, if it was cancer, where it had spread, if anywhere.

Nothing will be known till after the surgery.

There were mixed opinions between Gynocology and Oncology about how long it would take to find out whether the mass was malignant and, if it was, if it had spread.
Gynocology said they have had patients wait up to two weeks for results.
Oncology said three days.

On the sixth day of admission, it was decided we should go home until the operation.
It was five days until they would operate.
Amelia was so depressed and anxious, they thought a few days leave may pick up her spirits.
It was Tom's 10th birthday on the third day and it was hard to imagine us not being at home to help him celebrate reaching double digits.
I also knew it was important for Tom's emotional wellbeing that we be there for him on the day.

A final "discussion" was had outside Amelia's room before we left.
Through the door, I could see Amelia becoming distressed.
I pointed this out to our doctors and said "I need help. I need help getting her through this", but all they could offer us was more tablets.

As I walked back into her room, I pulled up a chair next to her, getting ready to calm her down, yet again.

Amelia was at a stage where she was SO angry and SO frightened.....
I was never going to be successful.

I held her hands and cried many tears as she repeatedly said......
"Why me? Isn't my A-T enough?".

Finally she stopped and said "Why are you crying?"
"Because I am scared" I said.
She stared at me for a while and finally said "Me too. But you are not the one that has to have the operation".
"No. I am not. But you are a part of me, so the pain and worry and being SO incredibly frightened.....I feel too. I am your mum and I have to look after you before, during and after all this. I am hurting watching this happen to you".

We both cried for a long time before I attempted to get her home for a few days.

Our Hell Part 2

As Amelia lay lifeless on the hospital bed from the happy gas, we had to ask.......

"Could it be Cancer?"

"It could be anything. You need to prepare yourselves for anything" the doctor said.
"We need to get you a bed upstairs on a ward".

Scott and I went out the front so Scott could make the long trip home.
Only one parent was allowed to stay.

He had brought his motorbike in and I was worried about him getting home safely.

He was shaking.
Uncontrollably shaking.

"Ring me when you get home please".
I was nervous that he may not make it.
I made him message me when he got home safely.

Back in the hospital room, Amelia was relaxed from the happy gas but anxious.
She wanted to go home.
I started wondering when we would ever get home.

At 1:30am they moved us up to a ward.
The Kelpie ward.
It was for adolescents.
It was spacious and so different from our last stay in December 2010.
This time we were by ourselves.

We slept a few hours before the noise outside our room woke us up.
It was morning time and breakfast was being served and doctors were starting to do their rounds.
A nurse explained the facilities and after a shower, I headed downstairs for what would be the first of many coffees at the café.
Amelia was content watching television.

Gynocology was the first department to come and visit our room.
Two middle aged ladies were very understanding of our concern and our need to be kept "up to date" with anything and everything they were thinking, researching and considering when it came to Amelia.
During the A-T diagnosis in 2010, doctors did not speak to us about what they were "thinking".
It made the actual day of diagnosis so much harder.
We wanted to move with them in their findings, rather than have it smacked into our faces at the end.

On this first day, they explained that the ultrasound showed a high probability of it being joined to at least one ovary.
They said that Amelia would be undergoing more blood tests and an MRI to try and further understand what this "mass" was inside of her.

Now this is where I get a bit lost.
I cannot remember the exact order of words, procedures or what I even did in that first week.

Many parents understand the "auto pilot" mechanism.
Where life suddenly because so stressful, so worrying and there is so much to understand and listen to.......
You shut down a huge part of your brain.
Your life becomes very mechanical, but also extremely focused on the most immediate and the most important.
For me, that was Amelia first and foremost.

Conversing with doctors, asking questions and looking to the next procedure.
It was looking after Amelia's normal daily necessities like showering, toileting and eating.
It was trying to keep her calm (which was near impossible sometimes), distracting her and trying to help her to stop worrying.
She was not sleeping.
She wanted to talk, debrief and talk about her worries at all hours of the night.
She did not want me to leave the room.

I remember Tom crying on FaceTime when he and Amelia saw each other for the first time since we were admitted.
Amelia had the happiest grin from ear to ear to see someone she adores so much and poor Tom just started erratically wiping his eyes, trying to hide it.
Our 10 year old was displaying the fear we were all feeling.
I looked at my dad standing behind him crying.

We were all petrified of what this fucking mass was inside of Amelia.

Scott went to work, looked after the pets, went to visit Tom AND came in to see us.
He was exhausted.

I remember them using "happy gas" to put a canula in Amelia's arm.
I remember the doctors madly researching A-T.

I remember the battle for them to put her under a GA for the MRI of the abdomen area and not force her to try it without (A-T tremors and her hysteria were not going to help her lay totally still).

I remember her going under anaesthetic for the MRI.

I remember her sobbing as they wheeled her into theatre.

I had a friend there and when she had to leave, I remember then walking out of the hospital and feeling myself start shaking.
As I leaned against a tree for support as my legs began to give way........
I finally began crying.

After 90 minutes, I received the call to go to recovery.
Auto pilot kicked in again.

My dad rings while I am making my way there.
He has gastro and can't have Tom.
Ring Scott and he goes home to collect him from school.

Scott and Tom together at home now.
Amelia and I together in hospital.

The next day Oncology arrived at our room and introduced themselves.

"We have joined the team looking after Amelia now".

Ok.
Shit has just got real now.

We are in serious trouble.

xxx

My beautiful friend Meredith

Before I write Part 2 of what has been our battle in the last few weeks, I need to write about something that is immediate.

Three days before I took Amelia to the Emergency Department at RCH, I received a message from a very dear friend of fine.

I may even say one of my best friend's.

It said that her 6 year olds brain cancer had spread to his spine.
The doctor had given them a prognosis of a few weeks.

I sobbed.
I sobbed uncontrollably.
I sobbed while she messaged me about her plans for him at the end.
I sobbed at the idea that she wanted to build a memorial garden at their home, to scatter his ashes.
She did not see my tears, only my words of support and love.

If I rewind, I jokingly called Meredith Hill "my stalker".

We had both been on the Parent Committee at school together.
We didn't really know each other.

After Amelia was diagnosed with Ataxia Telangiectasia.....
After we had been told to go home and "cherish" Amelia, I chose to drop her at school after the start of school and pick her up before home time.
I was not in the frame of mind to talk or explain.
It was 2010.

BUT she would catch me.
She would hug me.
She had absolutely NO IDEA what was happening to us.

Then she read about it when it was in The Herald Sun, our state wide paper.
She became "a friend" very quickly.
She was very different from the others though.
Meredith didn't want to DO anything like fundraise.......
She just wanted to be there for me and put a smile on Scott, Tom and Amelia and my faces.

She is still here with us.
Many others are not.

In the last 5.5 years, she has organised for flowers to be delivered to Amelia at school for her birthday.
She has seen Melbourne Demon Merchandise available at a market and totally smothered the stall for Tom.
She has sent Tom messages of support and told hime how "awesome" he is.
Meredith has arrived on our doorstep to give Tom a hug or Amelia some encouragement with her disease.

When I was suffering from severe depression, Meredith was the one to BANG on my front door repeatedly until I answered.
She was the one who wrote on Amelia's Project Page on Facebook to write about how inspirational I am to help pull me out of it.....

SHE IS A TRUE FRIEND.

Meredith is not after gossip or accolades for what she has done.
IT IS HER.

People call me strong, but this woman is an epitome of that word.

When Amelia was admitted to hospital recently, you all saw her comments and her wisdom.

She NEW what was happening to her son and so did I.
But she still wrote about her love and support.
She still spoke of "my girl" and "my boy".

We almost got into an argument on line when I said
"STOP WORRYING ABOUT US. FOCUS ON YOURS.

But that is not Meredith.
She genuinely cares for others.

BJ was diagnosed with an aggressive brain tumour in February.
Normal child to vomiting child.
As easy as that.

After 4 months of not leaving Benjamin's side.
Four months after being diagnosed with an aggressive brain cancer that then spread down his spine.

After 4 months of feeding him through a peg, sitting beside him through horrendous operations.
After 4 months of being EVERYTHING to him....
After him yelling at her and not talking to anyone.

He passed away this morning.........
In her arms.
The optimal place.

He was 6 years old.

After a text message this morning, we are all shattered.

Meredith, my whole family fell apart.

We LOVE you and feel your heartache.

YOU are our hero.
You are the most amazing person to enter our lives.

But you were never to lose a child.
When I met you.... YOU had 3 healthy children.
You were supporting us to lose OURS.

Tom is currently writing you a letter to say what he feels.
It will show you the kind of person you are from a 10 year old.

You have lost a child.
The worst possible thing to EVER happen in life.

You are everything that we would want to be in the same situation.

We will be someday and you will be the person we remember and look up to.

Love you forever and always
xxx

https://www.bing.com/videos/search?q=hero+mariah+carey+youtube&view=detail&mid=CE5B48615F117B978A09CE5B48615F117B978A09&FORM=VIRE

Our Hell : Part 1

Hi Everyone

12 months ago, our previous blog was deleted due to a "software update".
I set up the new blog thinking it was the beginning of something wonderful.
A new beginning celebrating two children that are amazing and a whole family traveling through the journey that is Ataxia Telangiectasia where Type 1 Diabetes was just thrown in for good measure.

A child already diagnosed with this horrendous disease and all the heartbreak that goes along with accepting you no longer have 2 children that will go through life like anyone else.
Schooling, marriage, children and growing old.

Then the second child is diagnosed with Type 1 Diabetes.
Ok.
It is hard.
But it is manageable and we can try, at least, to stay on top of that one.

One is Terminal and one is not.

The hospital visit for the second child meant that we were all separated over the Christmas period and that is what hurt the most.
There have been scary times with the Type 1 over the last two and a half years, but nothing that compares to the first child's diagnosis.
With A-T, you are virtually given an end date.
You can monitor and maintain, but it will happen.

Two people meet in 1990 and are a perfect match.
They are young, but fight to stay together.
They know that they match perfectly.
They DREAM of a life of growing old together,
Houses, cars, holidays etc.

But then life throws them a major curveball.
Children are born to them with diseases that are unimaginable.
Diseases where they cannot get sick with the "common cold".
It could kill them.

Ok.
Let's stay away from people who are sick.
You can do that at home, but it is hard.
Parents send children to school sick all the time.
People cannot understand the importance of it for a family like ours.

But the "terminal" side of it is there constantly.

Each "happy" day it is there.
Each "sad" day it is there.

You try to hold onto the thought "But she is still here now. Make the most of it".
But it is so hard.

Over 10 years we have watched Amelia's motor skills deplete to the point where she cannot walk by herself anymore.
We keep walking her, doing our own backs, hips and knees in the process, trying to hold onto that ONE THING.
Must keep the legs moving.

We toilet and feed her now.
Her speech is so slow and slurred, that she gets SO frustrated with us when we cannot understand her.

Ataxia Telangiectasia is not only terminal and a loss of motor skills.........
The child is also 1000 times more likely to get Cancer.

We thought we were safe from the cancer part.
A-T kids are generally extremely sick with colds and coughs that they cannot recover from.
Amelia has NEVER been.
She has always been considered quite "healthy".

When Type 1 Diabetes was sick, I had him in hospital.
You cannot eat to raise your levels/have insulin to lower your levels when you are sick.
Who wants to eat when they are sick?
It stuffs the whole management system up!

The mental anguish of Type 1 and the mental anguish of having A-T is difficult for everyone.
Constant talking and psychologists become involved.
The ability to always search for a positive is the most valuable trait to have for anyone.

But we are proud of our "happy" house.
We live like anyone else.
There is lots of sarcasm, laughter and discussions about life.
We appreciate a smile and are grateful for our friends and family.
We are generally positive.

I thought that we had been dealt MORE than our fair dose of heartache in this lifetime.
But then came another blow.......

A-T child starting complaining of feeling "hot" all the time.
Then she started vomiting.
She quite often vomits when changes around her occur.
New bus driver? New class? Someone sitting with her while her dad and I try to be a couple.
One vomit and then she is fine.

We had just returned from Thailand.
She had been "hot" over there, but it WAS hot.
She started vomiting on the plane when returning home.
She continued vomiting at home.
But it was more than once.
It would continue every morning until lunchtime.
It was many times.
She started complaining of bad "stomach cramps".

I gave it 2 days to see if it stopped.

It didn't.

I put a post on FB and many of my A-T friends said "take her to hospital".

Normally your heart has to stop for me to take you to hospital.

I started wondering if it was actually something "more".
The local doctor that came to our house when the bad stomach cramps began, had been concerned about her swollen stomach (it was hard).
Maybe I should get more expert advice.

While trying to keep myself calm, because I knew going to hospital was going to be a major upheaval for everyone, I debated with myself over how I was going to handle this.
Ambulance because I cannot move her?
But they will only take her to the local hospital.
They do not know anything about Amelia and her A-T.
Do we drive 1 hour away to the local children's hospital where she is an outpatient and they know about her.
Would she handle the drive while being so sick?
Am I overreacting and wasting everyone's time?

I packed a bag.
I don't really know what I put in that bag, but I knew we may have to stay overnight.

Tom?
He was at school and going to be dropped back home in a few hours.
What was I going to do about him?
I rang my parents for him to stay the night there and packed an overnight bag for him, including all of his insulin and needles.

I rang Scott at work and told him of my plan.
"Seriously?" he said. "Do you think she is that bad?' he asked.
I explained my concerns and he agreed I should go.
He said he would meet me up there after work if we were still there.

We arrived safely at Royal Children's Hospital in Melbourne.
The drive was calm.
I needed it to be for both Amelia and I.
My brain had fighting thoughts between me "overeacting" and "just checking".

Inside the Emergency Triage section there were A LOT of people.
It was 12:30pm.
Apparently many families use it like it is a "general GP" due to the long waits to get into actual local doctors.
They are sent to an even bigger waiting room (approximately 60 families when we arrived), while others, like us, are rushed through.
Amelia was not going to handle sitting in a waiting room for long, so I was hoping to get in quick.
We got in very quickly and into a bed.

Scott had remembered a time where Amelia had vomited like this when she was younger.
It had been a UTI.
We did a urine test and it came back clear.

They started feeling her tummy area and commented that she was sore around the appendix area.
A basic ultrasound was ordered.
Through this test they told me her bladder was VERY full.
3 LITRES FULL!

Humiliation and tears ensued as they tried to drain the bladder.
Scott arrived after 6 hours of them trying and it was just not happening.
The doctor was quietly telling nurses off for what should be a "basic procedure".
Amelia was very upset and angry and telling them that they were not allowed to try again.
Eventually the doctor said "I will do it myself through ultrasound".
Two nurses he held to a very high standard assisted with happy gas with the last and final try.

At 10:30pm, he looked at the ultrasound screen and said
"I don't think I am looking at a bladder at all. I think it is some kind of cyst".

Scott and I knew instantly.
It was not a cyst.
14cm in size and full of 1 litre in fluid.

It was not a cyst.



.......to be continued..........